Parenting can be a challenge for anyone, even in the most ideal conditions. But parenting a child who has a different neurotype than you can come with unique challenges.
I want to discuss a question that I’ve gotten a few times: Should I tell my child about their autism? How do I portray being autistic as an ultimately positive and valuable identity while not skipping over the real challenges that are associated with it?
This can be a complicated question because everybody’s situation is different and unique. Find out why I think on Neurodiverging today!
? Rather listen than read this post? This transcript is based off of Episode 22 of the Neurodiverging Podcast! Listen on Apple Podcasts | Google Podcasts | Spotify
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- Read “Short report: Autistic parents’ views and experiences of talking about autism with their autistic children by Laura Crane, Lok Man Lui, Jade Davies, and Elizabeth Pellicano.
Transcript for Ep 22: Asked & Answered: Should I tell my child about their neurodiversity?
(4/18/21 – This transcript still has many errors. Working on it! – Danielle)
Parenting can be a challenge for anyone, even in the most ideal conditions. But parenting a child who has a different neurotype than you can come with unique challenges.
Today I want to discuss a couple of questions that I’ve gotten a few times:
- Should I tell my child about their autism?
- How do I portray being autistic as an ultimately positive and valuable identity, while not skipping over the real challenges that are associated with it?
This can be a complicated question because everybody’s situation is different and unique. Different kids are different: different ages, different abilities to understand what’s going on in the world.
Parents have more or less experience with real autistic people. Parents are, or are not, autistic themselves. So there’s a lot of variables in place. I have my own ways of approaching autism in our family, as an autistic parent with an autistic child but our ways won’t work for everyone.
Luckily what is really cool is that we actually have research on this. Today I want to share with you some different research that has been performed around this question, and what we can take away from some of those pieces.
About the Research
The first paper I’m going to reference is called “Short Report: Autistic Parents Views and Experiences of Talking About Autism with Their Autistic Children” by Crane, etc. The published report came out just this year, in 2021, about research performed in 2019.
Let me tell you a little bit about what’s going on with this paper and why I think it’s pertinent. The researchers felt there wasn’t a lot of research being done on how parents talk about autism with their autistic children, especially in families where one of the parents is autistic as well. They created an online survey to gather data from what ended up being a small group of 34 autistic parents of autistic children, in the UK.
Although some of the questions were close-ended, most of the questions were open-ended. This means the parents could write in their answers from their own language, using their own ideas, and were not choosing from a multiple choice or true/false scenario.
The research itself and the information the study provides is really cool because the input collected is authentic to the individual, rather than study participants using the language of the researchers. In other words, the data the researchers worked with was something a parent actually typed in – responses that were real and authentic to the parents, and not something a researcher wrote and the parent had to decide whether they agreed with it or not.
Talk to Your Children About Neurodiversity (Honestly)
The first theme the researchers identified identified by the research can be summarized as: honest discussions about being autistic should be part of your everyday life.
Whether you are autistic as a parent yourself, or whether your child is autistic, if you want to normalize autism, and you want to make it clear that autism is a natural variation of humanity and part of the human world we live in, then you have to normalize autism by talking about it.
That doesn’t mean you have to be having deep, serious conversations with your children at all times! Bringing it up in everyday conversation can be really helpful for everyone involved. As an example from my everyday life, in our house when I get overwhelmed, I’ll just say, “My brain is really overwhelmed.”
By saying this, I’m pointing out the fact that my brain is reacting differently to the situation than another person’s brain might. I have very young children, so obviously you could do this differently if you have teenagers, or someone who can grasp more complex, nuanced concepts.
If I’m having a challenge that is based in my autism or my neurotype, then I do try to draw attention to it, because I think it’s really important to model that for my children. But I’ll also highlight if I’m doing something really cool. If I see something really working out because of my autism, I try to show that too.
I do the same thing with my kids. You know the old advice that if you want your kids to keep doing a positive thing, you don’t critique them when they do something bad? You just keep telling them they’re doing a good job when they’re doing a good job. You are noticing and commenting on the good.
Here’s a great way to approach this in your everyday life. When you see your autistic or ADHD child’s brain doing something that is really useful, or cool, or creative, and it’s something a neurotypical brain might not do as well or as easily, you can simply say to your child, “I notice your brain is doing this, and I think it’s really cool!”
The truth is that a lot of children who are autistic, ADHD, or have a different neurotype are told (or shown) that the way that their brains work differently are not good, not valid, and not valuable to the world. If you can point out circumstances where their brains and our brains are useful, valuable, and valid, that can go a long way to countering any kind of stigma they’re getting from outside your home,
The Power of the Diagnosis
Now, this idea of open honest discussions about being autistic in everyday life is also really important in terms of the question I mentioned at the beginning of this post: Should I tell my child about their autism diagnosis?
I completely understand why some parents, especially neurotypical parents, experience concern or stress when they have to tell their child about an autism or ADHD diagnosis. I think, personally – as someone who was diagnosed as an adult – getting my diagnosis saved my life.
The diagnosis made everything make sense. I knew that I was different and not processing things the same way as other people. and I was really good at things that other people didn’t seem to be good at, and I had huge challenges in spaces where other people didn’t seem to be challenged. I knew those things, already.
The autism diagnosis didn’t change anything about me, but it gave me a framework to understand how my brain is challenged in some ways, but also how my brain is awesome at some things. Having that framework saying, “I’m not a neurotypical person but I’m definitely a person. I’m definitely still normal in this other way,” is really valuable.
Kids are very capable of telling they are different from other kids, even from a very, very young age. In my opinion, if you miss your chance to frame that difference for your children, to frame their brains as totally normal, correct, positive, and valuable brains, even if they’re different from neurotypical brains, then your children are potentially going to grow up thinking that there’s something wrong with them.
Your child knows they’re different and that they are doing things differently. If you don’t take the chance to get in there early to normalize that difference for them and say, “There are other people like you! You’re not a weirdo, you are just part of this group over here. There’s still a group for you. You are still part of the world and part of society.”
If you miss that chance to frame neurodiversity for your children, they are going to be dealing with that fallout for a really long time.
I don’t say this to scare you, or to make you feel like I’m judging you as a parent. It is true that some children may not have the tools to understand this kind of framing. But on the whole, most kids are capable of being told about an autism diagnosis as a child, in an age-appropriate way.
You are doing your children a favor on the whole. You frame it as a difference, as a different neurotype. They are still normal, they are still part of the group; they are just not neurotypical, and that’s it. There’s nothing else you really have to say.
Tell Your Child Sooner Rather Than Later
There’s a quote in this study that I thought was really cool. One of the autistic parents who participated in this study had something to say about telling their child they were autistic. They said, “I’m so glad I told him when he was young rather than waiting for some time that he was ‘ready.’”
I’ve heard several times from neurotypical parents that you’re doing your child a favor by not telling them about an autism diagnosis when they’re young. You’ll wait to tell them when they’re eighteen, or some arbitrary number when they’re “old enough.” (To be honest, I really don’t understand this perspective, and I’m sorry if I’m not doing it justice as a result.)
Their neurotype – our neurotypes – do not change as we age. What changes is how we process our place in the world. We’re the same neurotype as a newborn as we are when we die. Our presentations, the world, the way we approach the world might all change, but the neurotype, within a certain range, is going to stay the same.
Holding onto that information that will affect your child’s wellbeing for a decade because you’re scared to tell them – that’s not good parenting. You’re not doing them any favors by refusing to allow them information about their own brain, and their own health, and their own ability to be part of the world.
If you are afraid to tell your child that they are autistic, think about why you are afraid. I suspect, in most cases, it’s that you have your own internalized stigma against autism. If you’re a neurotypical parent, and you’re afraid to tell your kid they are autistic, what are you afraid of, really? What is the concern that you have? Think that through.
Being autistic is not bad, it’s not negative, it’s not wrong. If you are worried or uncomfortable telling your child that they are autistic, ask yourself if what you’re really worried about is that your child will think you’re telling her that she is wrong or bad, or that she’ll never fit in. You’re avoiding telling her because, of course, you don’t want to hurt her by giving her that idea.
One of my goals for this podcast, and this site as a whole, is to help people understand that autistic people are part of this world. We do fit in. Tons of us fit in perfectly well, but we do that with the knowledge that we are not neurotypical.
Here’s another way to think about it: autistic people who don’t know we’re autistic have to spend all our energy trying to fit in with neurotypical folks, because we don’t know that we have another place to fit in, or that autistic spaces are safe for us. When you can see it that way, it’s not really doing your child (or anyone else) any favors, but to make life more difficult for us.
The second theme that came out of this paper is the idea of shared understandings between parent and child. Shared understanding is the idea that an autistic parent can comprehend and empathize with what their autistic child is going through for a couple of reasons.
First, an autistic parent and autistic child share a neurotype. This leads to a similar or shared experience of navigating the world as a neurodivergent person. It also means that the parent can share their experience of being autistic with their child. Finally, an autistic parent is in a position to have a similar or shared experience of how neurotypical people related to autistic people
Another way to look at it is: if you’re not autistic yourself, and none of your other family members are autistic, your child may be the lone autistic person in your social group. This can feel really alienating, no matter how often you tell them that they’re not wrong or different or bad. If they’re the only autistic person they know, they’re probably not feeling related to as often as we would like for them to be supported and upheld.
If you are the same neurotype as your child, then one great idea is to give them personal examples of what you’ve gone through, and strategies you’ve used to solve problems in the world is great.
If you’re not the same neurotype as your child, you can find a lot of great resources online, within your community. There are a wide variety of groups, like autistic children’s social groups, as well as support groups for autistic children and autistic adults.
And by “support,” I don’t just mean counseling or therapies, but the support that comes from seeing other people like you. Because you can be told, as much as you want, that there are other people in the world like you, but if you can’t see them and talk to them and see how their experiences are the same as you, you will not be getting that support from them.
I think we all know there’s a difference between being told something – in this case, that there are other people like you – and truly experiencing it. It may not be real to you or your child that there are people like you until you meet them, talk to them, and see how similar their experiences are to yours. So if you can offer that to your child, you are doing them a great, great, great service.
Helping your child feel like they are not alone in the world, that they have a shared experience and a shared understanding with other autistic people is a great way to build trust and keep communication lines open. When your child is going through something difficult, knowing that there are other people who might have gone through the same thing, whether they want help or not, whether they just want to know that someone else has done it, it can be so validating and so positive an experience for them. I really can’t recommend it enough.
Disordered? No. Amazing? Yes!
The third theme from the study was the idea of positively supporting children to make sense of themselves as different. At this moment, in the Western world, neurotypes such as autism, ADHD, OCD, and bipolar are diagnosed as ‘disorders.’ (If you’ve listened to or read other episodes on this site, you’ll be familiar with this already. If not, go listen to episode 7.)
When you go to become professionally diagnosed, you’re diagnosed with autism spectrum disorder, you’re diagnosed with attention deficit hyperactivity disorder, obsessive compulsive disorder. In effect, the doctor is telling you: you’re disordered, your brain is not organized in the way it should be, it is wrong.
I don’t find that language particularly helpful, and I’ve found many other people who do not find that language particularly helpful either, because from the neurodiversity perspective, as an autistic person, I’m not disordered. I have a different brain and I go about things differently, but I’m not a ‘wrong’ person because I’m autistic.
The medical language of “disorder” is not helpful – for you, or for your child – from a psychological standpoint. Talking about a “disorder” or a brain not functioning “normally” can feel invalidating and negative. So, it’s really important when you’re talking to your child about a diagnosis to help them see it as a difference instead of a disorder.
Talking about difference, you can help your child understand that it’s okay to be different from other people, that everyone’s brains work differently, that there’s nothing wrong with that. Not everyone thinks the same or processes information the same way – that’s what makes people so cool! The fact that everyone is different is such a positive part of the human experience, and it makes the world an interesting place
If you can frame for your child the fact that they are part of what makes the world amazing, you are giving them such a gift. Talking about neurodiversity and how all people have different brains is also a fantastic opportunity to try to reverse stigma or get in front of any kind of stigmatizing belief, by talking about neurodiversity, and talking about how all people have different brains.
It means that they are a different thinker. That’s normal, that’s expected. Even among groups of people who share similar traits, not everyone in the group thinks the same. Helping your child to develop a strong belief that they are just a different thinker, and not ‘bad,’ ‘wrong,’ or ‘disordered’ is immensely important to their self-perception as valid and useful. More simply, ‘different’ doesn’t ‘equal’ wrong
Strength In Difference
This is also a really good way to talk about the strength of autism, or ADHD, or whatever the neurotype is. The other problem with the ‘disordered’ way of looking at things is that it really focuses negatively on the things that are challenging for us. And yes, autism brings challenges. No one is trying to say otherwise. ADHD brings challenges. But being neurotypical brings plenty of challenges, too. There are plenty of things that neurotypical people can’t do very well compared to ADHD brains or autistic brains. And that’s not to put down neurotypical people by any means but rather to say that we all have different strengths and weaknesses. and If you can really talk about different brains as being differently capable, in different areas, then you can really start to frame for your child that even if they have challenges sometimes, there are going to be things that they are SO good at. And SO capable at. And That can be really empowering for a young person. Especially if their school or their friends or the other social circles going on around them are somehow more focused on their challenges.
For example, if you’ve got a child with ADHD who is not functioning well in school because they are hyperactive, there are plenty of people with ADHD who use that hyperactivity to their benefit. So, Talking about differences really helps you focuson how it’s not the child, it’s not the individual, that is ‘wrong,’ it’s that the structure underneath them is not supporting them. But that can really create a boldness for your child, and a clarity, that they’re not the ‘disordered’ one, that the society is not supporting them.
Even very little kids can understand this. I once saw a teacher that was talking about an example lesson they did in their class where they had one student pretend that they had an injury on their finger. They gave that student a band-aid for their finger. Then, they went around the classroom and every student had to choose where they had their pretend injury. But no matter where their injury was, they got a band-aid on the finger. Now, for folks who have an injury on their finger, that band-aid is really helpful. For folks who have an injury on their knee, that band-aid is not helpful. So, we see that treating everyone quote-unquote “equally” or “the same” doesn’t work when people are actually different underneath. So even little really young kids can understand this kind of idea that if we treat everyone exactly equal, perfectly, all the time, that we’re not actually creating equality. And, when that comes to talking about how your school or your teacher or your kids’ social networks of whatever type, if they’re not supporting your child as an individual, and noticing their differences and taking those into account, then they’re not supporting the neurotype that that child has. So even little kids can understand the difference between ‘equity’ and ‘equality’; and understand the difference between a person doing something wrong and the system being the problem.
Fit the Discussion to Your Child
That brings me into the fourth theme, which is: tailoring discussions to the children’s specific needs. So Everything I’ve mentioned so far is generic enough to be adaptive to almost every child out there. But you do only need to talk to your children about the things that are actually relevant to their situation, especially again younger children. A teenager is going to be able to research themselves, to some degree, and talk to you about more complex issues. But for younger children, you just need to focus on the things that they are stuck on, or the things that they really like. So You don’t have to be hung up on terms, you don’t have to be hung up on vocabulary words, you’re just trying to find resources that explain autism or ADHD in an age-appropriate way, and that highlights the traits that apply to your child. Again, every child is different. Every autistic person is different, every ADHD person is different.
So Telling your kid about a list of ADHD traits as lined out in one of the diagnosis manuals is probably not going to be helpful for your child. What is helpful is, as you go through everyday life, in a very light, chill way – you don’t need to have this heavy, serious discussion about it, but in a very normalizing, chill way – you’re just saying, “I notice that your body is very busy, and some bodies are not very busy. And that could be related, that’s how different brains are different.” Or, “I notice that you really like to focus on this set of activities and your sister maybe doesn’t really like to focus on this set of activities, and this is one of the ways that you are different.”
One of my children, My autistic son, he goes up to them and stares at them in the eyes. And it can be really off-putting to some folks! But it’s a stim. And his sister does not like it. His sister thinks that it’s quite off-putting, which I understand. But talking about how well, your brother likes to do this, there should be boundaries, he shouldn’t just be able to walk up to her and freak her out, but pointing out that the feeling that he gets when he stares into somebody’s eyes versus the feeling that she gets when she stares into somebody’s eyes, how those are different feelings because our bodies are reacting differently. Just as basic as that can be really, really validating for whatever the behavior is. And we want to talk about consent and alternative methods of getting my son the stimulus he needs without freaking his sister out. So, you know, there’s the normal parenting that has to come into that.
But you can very basically just point out, “I notice that you’re doing this thing because it makes your body feel good. And another body might feel differently.” And that’s talking about neurotypes, that is talking about neurodiversity. It does not have to be complicated. And If you do it day to day, occasionally, then you’re peppering it into your conversations. and Your kids will become aware of it and start to talk about it themselves. ‘I notice that my body does this but I notice that her body doesn’t seem to do that. What’s up with that?’ And They’ll bring it up themselves.
And that’s the other thing:. If you can keep your conversations as child-led as possible. I might bring something up to my kids, but if they’re not into talking about it, I’ll drop it like a hot coal. If they bring it up, then I’m always trying to give them that attention and focus on them in those moments because I want to validate their experience. And I also want to encourage them and show them that it’s important to me that they’re paying attention to their own ways of thinking, their own ways of processing, and their own kind of bodily awareness. So when they bring up any of those things, I try to drop what I’m doing and really focus on them because I want to validate that thinking about your bodily awareness is really important. And if you’re taking the time to do that then I’m here for you. And that’s another child-led way to really pepper in neurodiversity into the conversation day-to-day, and so that I think that is really important. And that’s something that’s pretty easy to do, honest, once you get in the hang of it.
How Is This Study Different Than Previous Work?
I just want to talk about two more things really quick. The study that I’m using, that I’m basing this episode off of, noted that in previous research done on how to talk to children about autism, most of the previous research done before this study was done on probably neurotypical parents, Probably the best way to say that would be ‘non-autistic parents,’ or ‘parents without an autism diagnosis.’ So, previous studies have not asked parents for their neurotype in the collection data. It’s probably not fair to say that all the people taking it were neurotypical, but we don’t know for sure that they weren’t. So this research that I’ve just been alluding to through the course of this podcast episode is different because it is all autistic parents, either self-diagnosed or professionally diagnosed who are giving their opinions about how to talk to children about autism.
Previous studies, though, with probably more neurotypical parents had two main big differences between the groups. First, in the sample with autistic parents, these parents pointed out that their own experience being autistic in the world felt like it was of great value to their parenting and their understanding and empathy of their kids. That having gone through so many of the challenges of being autistic in a neurotypical world as they had already, that they could help their kids navigate that somewhat better and have empathy for things that were really hard and challenging.
The second thing the authors pointed out as a difference between this and previous research is that autistic parents, at least in this study, did not seem to be nearly as worried about other people finding out about their kids’ autism as neurotypical parents were. So neurotypical parents in previous studies seemed to be worried that if “it got out” that their kids were autistic, that the kids would experience some kind of negative feedback or negative stigma from the knowledge of their diagnosis being made potentially public. Autistic parents didn’t seem to worry about that hardly at all. Autistic parents just didn’t feel like there should be a stigma associated with autism and felt more confident in their ability to combat potential negative feedback about the diagnosis, and so it really wasn’t as much of an issue.
I know when I’ve talked to neurotypical parents when I get emails from neurotypical parents asking about their autistic children, it does seems to be often brought up that they’re worried that if they tell their child about their diagnosis, and then that child maybe tells a teacher, or friend, or whatever, when the family isn’t all the way ‘out’ about the autism diagnosis, that that could cause some kind of negative reaction that will harm their child. And, Although that may happen sometimes, it is not something that autistic parents themselves – who do have more experience being autistic than neurotypical people – are worried about. So, it seems like that shouldn’t be something that’s at the forefront of your mind.
I would encourage you to really think about more what could, what positives could come out of telling your child about a diagnosis rather than worrying so much about the negatives. Although many people are still biased against autistic people, the world is changing. By the time your kids are grown up, I really do think we’re getting there. And Your children can contribute to making it a more equal world for everybody. And think of the social justice aspects, that if every kid who is autistic today was able to be happy about it, and to feel like they have a part of the world, and deserved to be here and there was nothing wrong with them, think about how the world would look in ten, fifteen, twenty, a hundred years.
So I hope this podcast and post have helped you answer a couple of questions! Again, if you want to read the study, I will put it in the links. Obviously a lot of this is my own interpretation and my own opinions.
Thanks for being with me on Neurodiverging! If you have any feedback, advice for parents with this question, or have questions of your own, please email me at email@example.com. I would love to talk to you and connect you with additional resources.
Thank you for being with me on Neurodiverging today! I hope that this discussion about talking to your child about autism was helpful for you. If you have any feedback on this episode, or advice for other parents dealing with this question, please email me at firstname.lastname@example.org. I would love to talk with you about it and connect you with any resources.
Until next time! We are all in this together.
If you have any feedback on this episode or advice for other parents dealing with this question, Please email email@example.com. I would love to talk with you about it and connect you with any resources until next time we are all in this together.